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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. RustyJ

    completely bedridden, extreme noise sensitive, room isolation from noise

    I just came across this thread. I hope the OP's sister is doing better. I lived in rentals so could not engage in major structural renovations. I found relief running a fan on my bedside table right next to my head. It not only helped to mask noise, even sharp noises, but subconsciously focussed...
  2. RustyJ

    Pathophysiology of skeletal muscle disturbances in ME/CFS (Wirth and Scheibenbogen, 2021)

    Ischemia (lowered blood flow) is one tie to brain and intestine dysfunctions in me patients. I have had scans identifying ischemia in the brain which can cause cognitive and sleep disturbances. I have also disaccharidase deficiencies for sucrose, maltose and lactose, which can be caused by...
  3. RustyJ

    Some ideas re Chris Armstrong's presentation at Stanford

    Can you quantify the benefits of the electrolyte mix? My hypoperfusion (which doesn't appear to be heart related and I pass the tilt test) is what keeps me bedbound 22 hrs out of 24.
  4. RustyJ

    Some ideas re Chris Armstrong's presentation at Stanford

    Wow, thanks for going into so much detail. It will take a couple of days to assimilate ;) I know what you mean about coffee... I am battling with getting off it as any creamer has the disacs. I'm also intolerance for gluten, so it's been a confusing 30 years. Milk was the big surprise, since I...
  5. RustyJ

    Some ideas re Chris Armstrong's presentation at Stanford

    Have you made any progress on this issue. I recently underwent a colon biopsy which identified inability to breakdown disaccharides (sucrose/maltose/lactose). I am looking for links between this finding and my me/cfs symptoms and possible treatments.
  6. RustyJ

    Viral Titers--A statement by Robert Naviaux

    Many illnesses display metabolomic changes, but these changes are not viewed as causal.
  7. RustyJ

    Viral Titers--A statement by Robert Naviaux

    Naviaux doesn't have a shred of evidence to support his metabolic-theory-of-everything or his anti-pathogen stance. It is a potentially limiting view, especially if Davis has climbed aboard.
  8. RustyJ

    From brain fog to clarity in 30 minutes

    Hi nanonug, could you also provide brand and dosage for your Ubiquinol, and brand for the Dicholoacetate.
  9. RustyJ

    Some ideas re Chris Armstrong's presentation at Stanford

    @Richard7, thanks for going to all that trouble. I am intrigued. Please post further progress.
  10. RustyJ

    Some ideas re Chris Armstrong's presentation at Stanford

    I don't understand fully the OP's post or subsequent, but I did experience dramatic weight loss when I stopped all cereals and increased meat intake. Also had a lot of gallbladder/reflux etc issues until I went off the cereals. So does this fit the model? It would seem to, or have I got this wrong.
  11. RustyJ

    ME Research UK withdraw from UK CFS/ME Research Collaborative

    I think you give them far too much credibility. MUS is an invention, a way to tie up these illnesses for the benefit of the DWP and insurance. It has little to do with whether the illnesses collated under the MUS banner are psychological or biological, but whether they can retag them as...
  12. RustyJ

    ME Research UK withdraw from UK CFS/ME Research Collaborative

    A statement about the reason for their exit might have harmed MERUK'S reputation. Not everything is in terms of what's best for the patient. One reason for the exit which hasn't been voiced is that MERUK might not have been getting an adequate share of funding. More often than not these...
  13. RustyJ

    Why do the Fluge/Mella trials seem to be more successful than off/trial reports?

    That's probably because most of the metabolomic studies are just 'buzz and excitement'. They don't reference a treatment, and don't differentiate between cause and effect. If you have put your faith in metabolimics, you might be in for a long wait.
  14. RustyJ

    Proposed new training module for Australia: CBT and GET

    I appreciate this info as it confirms suspicions I have had with the org. I have tried to be supportive of Emerge in my blog and their efforts to garner support for extra funding (probably for themselves), however I note they are very soft on criticism of GET and CBT. They tend to sit on the...
  15. RustyJ

    Angry Emails to the NIH -- Good or Bad? (Split thread)

    As far as I know Solve reps were involved at an early stage, possibly even prior to the first announcement. Certainly they had ample opportunity to raise these issues. So the question should be whether they did, and whether NIH did anything, or cared. If Solve ME did not raise these issues, why...
  16. RustyJ

    New CBT and GET threat for Aust CFS patients

    More on lack of Australian federal funding here
  17. RustyJ

    New CBT and GET threat for Aust CFS patients

    Great article on Prof Lloyd's new push to treat ME and CFS patients with CBT and GET in Australia. Lloyd was arguably the foremost ME/CFS biomedical researcher in Australia, but I guess the funding dried up. He is fast becoming Australia's Simon Wessely, as he has the Aust govt's ear and is...
  18. RustyJ

    NIH Funded Study to Identify ME/CFS Antibody Biomarkers..

    Just a follow up on my previous post in this thread about gluten cross reactivity. Here is a good link to an easy to read article which itself has links to research. My progress since that post continues to show improvement. Over the period of four to five weeks on the autoimmune gluten free...
  19. RustyJ

    CDC study reveals CFS patients are severely physically impaired, but have normal mental health

    Mental health function was used as domain or characteristic of the illness in the slide, per Dr Unger's comments, as defined by the SF-36 self reporting survey, irrespective of how it is defined elsewhere. I don't believe it was used here in the psychogenic sense, tho I understand the concerns...
  20. RustyJ

    NIH phonecall and Q&A, Tues 8 March

    I have read two slightly different sets of notes. In one set Nath appears to qualify 'fully recovered' as 'close to normal', not normal. If that is the case, then it may be they are being liberal with the term fully recovered.
  21. RustyJ

    NIH intramural research program update

    As with Lyme, much the same with the label post-infectious me/cfs. I note that it has been the consensus of the CDC and NIH that me/cfs may have been an infection, but is now psychogenic. Walitt's statements have consistently referred to this narrative. Firstly there is no discrete entity...
  22. RustyJ

    Extraordinary NIH ME/CFS study may be most comprehensive & in-depth yet

    So at what point do you pat yourself on back for a job well done in getting the NIH to listen and modify their study? Is it when they have removed one or two impediments to good science, and the study proceeds on that basis, or all of them? Removing one or two is not a good result. Nor is it...
  23. RustyJ

    Extraordinary NIH ME/CFS study may be most comprehensive & in-depth yet

    Actually the main point I was making, perhaps badly, was that is an odd situation where patients are changing scientific methodology. Whether or not it is via pressure or by listening is arguable. Perhaps the upcoming results of the CDC multi-site study had more of a bearing anyway, in that it...
  24. RustyJ

    Extraordinary NIH ME/CFS study may be most comprehensive & in-depth yet

    Looks more and more like science by braille. Peeling off bits of the study, because of patient pressure, is not 'listening to us'. It is a ludicrous situation when non-scientists are pointing out major methodological errors in science.
  25. RustyJ

    Extraordinary NIH ME/CFS study may be most comprehensive & in-depth yet

    It has been since rumored that the FMD group has been dropped - I say rumored, since word of this has once again first come to us via informal back channels, rather than as a public announcement. The Lyme control group has some semblance of relevance, according to Nath, because it can be...
  26. RustyJ

    NIH Funded Study to Identify ME/CFS Antibody Biomarkers..

    I find this study interesting because of the gluten intolerance angle in particular. I suspect some ME patients are actually undiagnosed celiacs. Many patients have resorted to going gluten-free with only minimal impact on their symptoms. However, such patients may need to remove other foods...
  27. RustyJ

    NIH intramural research program update

    Hillary's tweet was the first time I knew of the nature of your work was mentioned. The fact that you worked in a public relations capacity at NIH is certainly more relevant to claims of NIH partisanship, than simply 'fellowship', whether or not those claims are justified, I am sure you will agree.
  28. RustyJ

    NIH intramural research program update

    Perhaps if you look a little further up the thread you will see I have quoted two of Brian's comments regarding his stay at NIH, and in my opinion they do not reconcile, which is why I asked for other references.
  29. RustyJ

    NIH intramural research program update

    BTW, I don't consider that Brian did reveal that he was a NIH Press Officer (public relations officer) in his letter, and can't find any reference to where he did. Perhaps someone could point me in the right direction? Just to clear up the conflict.